Dialog Box

Chantelle's Story

Chantelle was born with NF1 from a hereditary mutation that was passed down from her mother’s side. 

At birth she was born with a discolouration on her left arm and café au lait spots, so given her mum’s NF1 diagnosis, by three days old, Karla knew her daughter had NF1 too.  

A neurologist diagnosed a plexiform neurofibroma in Chatelle’s arm when she was a toddler. This type of tumours runs deep and takes over several nerves in her arm. 

Despite the presence of the tumour, she is not symptomatic and loves to dance and do martial arts. 

She also has a smaller plexiform tumour in her chest, that is monitored annually through MRI’s. 

As Chantelle grew she developed scoliosis, which caused minor curvature of the spine and for one leg to be longer than the other. She is monitored closely by a team of medical professionals as she may require surgery on the growth plate on of her legs to help further curvature of her spine.  

At 12 years old, Chantelle is a happy and fun kid, who loves Harry Potter. She has never let NF stand in her way and has overcome learning difficulties and developmental delays, to excel in school, make wonderful friendships and be an incredible big sister. 

Chantelle’s little brother Xavier has NF1 too, and has experienced much more severe complications. 

Chantelle often tells her mum that she is glad that she has NF, so that her little brother Xavier is not alone and she can “help him”.

Since Xavier was diagnosed with NF1, Chantelle has decided that she was supposed to have NF, so that she could help Xavier and be there for him.

Donate